Inside the Enabled Mindset with Iain: Ataxia

A progressive disorder and chronic illness put a halt to Iain’s round the world train trip several years back, before he even knew what ataxia was. Now he’s ready to bravely continue the journey, one train at a time, while raising money for ataxia research. Read on for his fascinating story.

First off, can you tell us a bit about yourself, and why you love traveling?

I’ve always travelled.

Even before my first real overseas trip, over 30 years ago (yikes!), my natural curiosity had me thumbing through faded copies of National Geographic. But it was never the famous sights that this curiosity was attracted to, and the same has been true of the travels that followed.

No. For me travel is about just one thing. Experience. How I myself experience this amazing thing called Life. And, importantly, how others experience this Life too. There is no better education than travel.

And as trains have always offered me the chance to really interact with local people – local people just going about their daily lives, you know, like going to university for the first time, visiting their own relatives in distant parts, then a local train journey has usually featured in past travels.

You told me you were on a round the world train trip in 2013 when a medical condition made you return home. Can you tell us more about that trip, as well as what happened to put it on pause?

Rail travel has given me so many insights into the lives of others, people for whom rail travel was part of their daily lives. I don’t know why, perhaps it is the relaxed atmosphere afforded by rail travel, but people are more willing to talk to “strangers” on a train. It’s not just the time available either (there’s plenty of doing-nothing time on buses and planes too). But trains are set up so that passengers actually face each other, rather than look at the back of each other’s heads for hours on end.

And if you put two humans face-to-face in a relaxed atmosphere, eventually they will talk to each other.

So an idea formed in my head. As each of these short train journeys had afforded me such a huge insight into the areas that I was travelling through, might it be possible to add them all together into one very long journey? Would it be possible to travel around the entire planet using only trains? Except the blue bits on the atlas of course. They DO tend to get in the way of land travel. So there would be a few occasions where an airport had to be braved, but these times would be avoided if at all possible, and where completely unavoidable, then the distances involved would be minimised when possible.

So I spent 18 months poring over atlases and train timetables, seeing if this was indeed possible. And it was. But just to make it that little bit more difficult, I wanted to include all of the planet’s best railways too (the longest, highest, most iconic etc.)

But there was also something else driving this curiosity now. A feeling that it was perhaps “Now or Never”.

Since 2010 I’ve been being treated for a simple balance problem. Initially, this was merely an inconvenience.

As there was no definitive reason for my balance issues, I was taking an assortment of drugs in a “trial and error” way, until something worked. Eventually a drug was found that seemed to alleviate any symptoms: Serck (probably a brand name). So when I first set out on my “round-the-world-by-train” journey, I was also carrying a bag full of prescription medicine (oh, how the Russian custom officials loved that bag!)

But within a few weeks of leaving the UK, it became apparent that the drugs weren’t working after all – or were no longer working. I had fallen over a few times. The first time was in Hamburg train station (I fell down the stairs, while descending the stairs and trying to read a departure board). I subsequently fell over in a hotel room too, but luckily it was onto a thickly-carpeted floor, so no physical damage was done.

So I was now very aware that “something wasn’t quite right”. But, of all the trains that I had planned to ride on on this journey, there was one that I REALLY wanted to experience. And I was so close to it too. The Trans-Siberian Express. A whole week on a train between Moscow and Vladivostok.

So instead of returning to Scotland for a more thorough medical examination, which I knew I really should have done, I pushed on. Well, for a few more days anyway.

The Trans-Siberian was every bit as good as I had imagined it would be. And then some.

I was travelling in a compartment shared with a constantly changing cast of strangers. There was one constant though. Valentina. An elderly lady from Minsk, in Belarus, she was travelling all the way to Novosibirsk, in Siberia, to see her baby grandson for just the second time ever (the first time was at the birth). Importantly, perhaps, she didn’t speak a word of English. And there was only so far my “zdravstvuj” was going to get me in conversation. But with a combination of hand gestures and smiles, we laughed for days. Luckily, one of the passengers who shared our compartment for a day or so, Sacha, spoke both languages beautifully, so was immediately assigned as the Compartment Interpreter.

However, with each passing day, as the train trundled inexorably onwards, I was very much aware that I was getting farther from the medical treatment that I undoubtedly required. And as Valentina would be departing the train at Novosibirsk anyway, I had decided that I would stop there and assess how I fared in the world outside of a train compartment.

My balance wasn’t great though. I would have to return to Scotland. Maybe some heat and elevation would help? I decided that it would, rather than return immediately to a cold Scotland. Ooty it was then (via Astana, New Delhi and Coimbatore)!

“Ooty?” I hear you say. It’s not as random as it sounds.

During all of those months spent poring over train maps and timetables, there was one video/song constantly playing. I had discovered an amazing video for a wonderful little train in India. The Nilgiri Mountain Railway. And the rather catchy video/song showed images of Bollywood dancers singing and dancing on the roof of the train. I just HAD to travel on that train.

I saw the train. It was far too busy to actually get on (the heat and elevation had done nothing for my balance problems, as hoped).

I then flew back to Scotland, and to the medical attention that I no doubt needed.

How did you feel when you were diagnosed, and knew that your condition would progress?

The diagnosis wasn’t immediate. It took a never-ending succession of doctors and neurologists 17 months (!) to discover the cause of my balance and mobility problems. And when it finally came, it was a diagnosis for something that I’d never even heard of. Ataxia.

Or more specifically in my case, spinocerebellar ataxia. A very rare genetic condition, for which there is currently no cure.

And worse still, it’s progressive. So I now know all of the abilities that I will lose – and that there is nothing that I, or anyone else, can do to stop it from happening.

Excuse the railway pun. But it sometimes feels like standing in front of a speeding train – and there is nothing I can do to step out of the way of the inevitable collision.

Were you afraid that you wouldn’t be able to travel and do other things that you love again?

Initially, I was in a daze for months. It wasn’t just travel that I would no longer be able to enjoy. It was my whole future (or the one that I had always expected).

It’s just like a grieving process I guess. Except, that in my case, it was the loss of my expected future that I was mourning. Mountains would no longer be walked over; dancefloors would no longer be witness to my Dad-dancing; and, as I’ve just started to experience the first signs of impending speech difficulties (expected), songs will not be sung.

But, as with all grieving processes, time is a great healer. I no longer mourn the loss of an expected future, I am now looking forward to enjoying a new future instead. Yes, maybe not the future I had expected, but it IS my future. A different future perhaps. But a future nonetheless. And it is up to me what I do with it.

I’ve been through the “woe is me” depression stage. And then the “why me?” angry stage. Now I’m at the defiant stage.

I had always known the importance of time. Of squeezing every second from every day. But my ever-diminishing abilities mean that time now has more importance than ever.

What made you decide to continue your train journey around the world? Was it a hard decision to make?

Making the decision was surprisingly easy actually. The harder choice, the option that has been told to me a million times, and by people whose views I usually heed, is NOT to go off on this trip. Not to concentrate on fundraising for others. But to stay at home, and prepare myself properly for the inevitable.

That would just be criminal in my mind. I know that my abilities will diminish with time. The symptoms of ataxia are well-known, the only variable though is the rate at which the condition progresses. And luckily for me, for now anyway, the symptoms are progressing quite slowly.

So while I still can, I will.

I know right now you’re gearing up to hit the road again – do you have any fears that you’re battling at the moment about that trip? If so, how do you handle them?

Just the usual worries when traveling solo.

Health-wise, I know what is likely to happen, just not when. And in any case, if my health problems necessitate an immediate return to Scotland, then I have travel insurance for just that situation.

You sound like an incredibly strong individual, knowing that things are going to deteriorate, but pushing onwards anyways. Do you think your condition made you stronger or more determined in some ways?

Stronger? I’m not so sure. If anything, ataxia has made me more intolerant. Not of people in general (travel does that to you, makes you more tolerant of other people and their situations). But less tolerant of people who waste their precious time. Time is unbelievably valuable. And I am very aware of wasting just one second of my own time, on people who don’t value their own.

More determined though? Definitely. I know that I won’t be able to do tomorrow what I am able to do today. A sad fact. So it just makes it more important to use every last second wisely. While I still have the choice.

You mentioned to me that you used to be the type of traveler who was more go with the flow, but because of your condition, you have to plan things out very rigidly now. How do you feel about that transition?

Not great to be honest. But it is just like my future in general. Yes, I would prefer things to be different. But this is how they are. I only have two options now: Overly-planned travel, or no travel at all.

And I choose the former.

What types of other changes and adaptations do you have to make for this leg of the journey that you didn’t have to take into account before you were diagnosed?

Easy. My walking stick. Sometimes it is the biggest annoyance/hindrance. You see, for the time being anyway, I only need to use the stick for any change of direction or elevation – and, rather perversely, for actually standing in the one spot! So most of the time, I actually carry it. And as I always need to have one hand completely free (ready to grab onto something solid when needed), this means that I have no hands available for anything else. So when I need to use a hand for anything, I need to stop moving and balance my stick somewhere.

What is the biggest obstacle that you have overcome due to your medical condition, or what is the biggest obstacle you foresee on this coming leg of the journey?

Again, and unfortunately, this is an easy question to answer. And I expect it will be the same, or worse, elsewhere. Not being disabled enough!

Sometimes I feel like my condition would be more acceptable to others if it was more apparent. If I used my walking stick continuously (even when I didn’t actually need to), or if I was already in a wheelchair. But these things will come, and until they do, there is no way that I am going to speed-up the progression of my symptoms.

What was I saying about feeling defiant?

You’re raising funds for an ataxia charity based in the UK. Is there a link we can share with our readers so they can donate?

I have already raised £790 of an initial, rather arbitrarily-chosen, fundraising target of £1,000. And I haven’t even left the UK yet. I have spoken to Ataxia UK and this target will be raised when passed.

What’s the most important thing you’ve learned from traveling?

Learned. A well-chosen word. Because that is exactly what travel brings. Education.

The most important lesson? Learning how to adapt. We are all different. And there is no “right way” or “wrong way” to live.

Good things will happen – and bad things will happen. That’s life. And, usually, there is nothing that we can do to prevent these things from happening. How we react to these events; how we let them affect us; this is completely down to each and every one of us.

What is your advice to anyone else out there suffering from a deteriorating disease, who wants to pursue their dreams, but is unsure they can?

My advice is the same as I would give to anyone. If it makes you happy then do it.

And do it now.

Any final thoughts?

I’m not doing this for the good of my health (in fact, some people might say the opposite). So dig deep.

True, if a cure ever comes, then it will probably be too late for me personally. But not for future generations. Ataxia UK suggest that a cure for one, or all, ataxias will be found by 2020 (their “2020 Vision”). More research just needs to be done first. And research costs money.

And as ataxia is such a rare condition, private medical companies see no financial return in spending any money on this research. Which means that it is down to charities, and their fundraisers, to find these funds.

Which is the real reason why I am dragging my kilted backside around Europe next month, and arranging 17 accessible walks for disabled people to take part in.

And be sure to check out more interviews with people who don’t let anything hold them back – click here!

Danie

Danie is a lovable and insane digital nomad of sorts. If you ever wondered what's a nomad, you've come to the right place. She enjoys oversharing, telling every detail of her life, and chilling on the beach, among other things. Danie is rather odd, and she likes it that way. Be sure to subscribe to hear more of her ramblings, and find out when Danie finally gets to fulfill her biggest dream: cuddling a platypus.